ME Association - Advertising Standards Uphold Complaint Against Gupta Programme for ME/CFS and Fibromyalgia

ME Association - Advertising Standards Uphold Complaint Against Gupta Programme for ME/CFS and Fibromyalgia – 11 April 2018

http://www.meassociation.org.uk/201...me-for-me-cfs-and-fibromyalgia-11-april-2018/

 

That's good. Before I knew better I wasted £99 on his DVD course about 10 years ago.

I did a bit of it, but soon realised it was utter nonsense.

The core activity was standing on a chart on the floor with circles with words in them and you had to step from one to another and recite some sort of positive thinking stuff.

It really annoyed me that steps to the left were for NO and to the right were for YES, and being left handed I object to the left being classed as the bad side! And I wasn't well enough to stand up for long enough to complete the activity.

Another bit was you had to monitor your thoughts all the time and whenever you had a negative thought about your health you had to recite a positive statement, or say NO or something. Of course all that does is make you think about your health all the time to check whether the thoughts are negative. I had better things to think about.

Remind you of anything?

Me too. When I heard about LP I thought, this is the same crap. How on earth did I get suckered in to such nonsense? Desperation I guess. And ignorance. And I'd spent all that money, so I felt I had to try it.

It went in the bin.

 

I must confess I also purchased the Gupta program in the first months after ME onset. Little did I know. What a load of BS!
Nowadays I have very strong feelings about all alternative treatments and therapies, quacks, psychobabblers, useless supplements, etc.

Very happy with this forum where the endless discussions of nonsense treatments are almost completely absent. Only Science can save us.

 

When I first became ill, in my search for something to help, I ended up meeting and spending time with cancer survivors. I met some lovely, amazing people.

Many of them swore by this kind of thing. It was an essential part of their battle. Of course, the thing they didn't always discuss or acknowledge was how much more essential the surgery, chemo or radiotherapy were.

 

Totally with you Mattie, I purchased the Gupta programme too in early months of illness, what a load of codswallop. I also had sessions with the ME self help guru. I would have tried anything. I know better now. @Invisible Woman I actually had a row with my dad yesterday, he was on about one of the mums at our local school who has cancer and how she wouldn't be alive today were it not for her positivity. I went bananas and said she may be positive but she also has a fantastic medical team and access to treatment that is keeping her alive. Also mega local support in terms of fundraisers, hero status etc...(I can't help feeling a tad bitter about my own lack of support) Anyway, as Mattie said, only science can save us.

 

I hate that positivity keeps me alive narrative. It's so damaging.

I was with friends once and one was telling us about someone she knew who was an inspiration and she was sure he was only alive now because he had fought bravely when he had cancer. No mention of the medical treatment.

She was sitting right next to someone who was mourning the death of her husband from cancer very recently. What was she saying about that woman's husband - that it was his fault he didn't try hard enough. Awful. I had to intervene, it was so painful.

 

That's the problem with these attitudes. I was at a Reike event (I knew and liked the person running it). There was a young teenager there who had a really noticeable neuro problem. She had quite strong, constant tremors. She mentioned she had been bullied at school because of it.

The event holder was wittering on that the universe sends us what we need to learn? This poor kid's face. I just cut across the event holder's little monologue and pointed out that no one deserves to be ill or becomesi ll to be taught a lesson.

These guys never stop to think that just like when you shine a torch in one corner the rest of the room seems darker, applying fake positivity can actually be the cause of, and spread, negativity in people's lives.

 

This.

 

I remember trying the Gupta program years ago too. Thankfully they had a money back guarantee then so I didn’t lose any money!

 

Frankly, you can find the same 'tools' on YouTube for free. No one needs to pay for this dross.

 

I only got as far as getting the free introductory DVD; still have it somewhere along with Perrins book, some Yoga DVD, some other DVD entitled 'Freedom from ME' (still in the plastic wrapper), Paul McKennas 'I can make you sleep',............

eta: clearly none of them made any difference

 

Perhaps they'd make supportive coasters @Sly Saint

 

1. Harley Street Solutions said that ‘electrical sensitivities’ was not a recognized medical condition and therefore their claim to be able to treat it could not be in breach of any rules.

So they offer a treatment. Then when challenged, they claim it's ok because it's not a treatment at all as there's nothing to treat. Yet they take the money from these people for a non-existent treatment despite this view and think this is okay. It disgusts me.

 

I'm so glad that this has been upheld by Advertising Standards. I looked into Gupta a few years into my illness and didn't go for it but I'm still on their mailing list. I've had some emails recently and noticed how he's now talking about mindfulness. It really frustrates me because I actually find mindfulness really helpful (in terms of living with symptoms, reducing stress and maintaining good mental health despite terrible physical health) but it is in no way a cure. I can't understand how someone who truly understands and practices mindfulness would ever be able to sell it as a cure in this way. Mindfulness is nothing without compassion and this is the very opposite of compassion in my view.

 

Well done the MEA

 

What drives me bonkers is seeing ads for these sorts of therapies on Twitter and testimonials on YouTube...they always use the word "recovery." I don't doubt that there are people who are helped by such interventions...but why do they all have to say "recovered?" They would be more honest if they marketed their techniques as supportive/coping techniques. The real problem here is the purposeful melding of ME and CFS into one diagnosis and the conflation of CFS with psychological disorders that are fatiguing. This in turn brings out profiteering charlatans mass marketing junk which creates a social environment wherein CFS can be a mocked illness. Sorry for the vent, but I am glad the Gupta Program has at least been called out by one authority group.

 

It's obviously really important for people with serious illnesses to try their best to stay positive, to help them cope with their awful problems. The sham science is when someone's physical illness is presumed to not be real, and they are supposed to positively think their way out of it. A lovely and close work colleague was lost to cancer very recently; a very science based and level headed - and lovely - man. He was under no illusions what positive thinking could and could not do for him, but he very much valued the counselling he and close family had to help them cope.

 

I am sorry for the loss of youy workmate @Barry.

I have nothing against anyone seeking support for anything and wouldn't judge them for it.

Personally, I don't believe that everyone who is seriously ill wants or needs this positivity stuff. I feel it is damaging to puah people to feel positive (or say they do) when actually they're angry, sad or scared.

The way I have heard some talk, it's as if their positivity alone is what meant they survived. They will even happily say this in front of people who have recently lost close ones. The implication, intended or not, being that they are stronger, more positive, somehow superior.

People are people. We're all different and shouldn't be made feel bad because we don't feel the way other people think we are supposed to. Especially, when we are seriously ill.

My issue is with people who have been helped with this support in addition to effective medical treatment, encouraging me and trying to persuade me that I will see a significant improvement and recover with what was just a supportive tool for for them and no effective medical treatment.

In the early days I spent time, money and resources I could have better used elsewhere thanks to this kind of thing.

 

I think for some people it's very comforting to believe that positive thinking shields you from suffering. Its kind of a protection strategy - 'it won't happen to me because I know how to think positive and the universe gives us what we ask from it' (or similar). Its hard for people to accept that their health is not guaranteed and there are some things they have no control over.

Unfortunately there are lots of risks with this outlook. 1) shuts you off from feeling compassion for others - and learning from them 2) encourages you to blame/gaslight those less privileged than you are for their suffering 3) when you do inevitably suffer (this is inescapable), you blame yourself or your whole world view comes crashing down. Much healthier to accept impermanence and be grateful for what you have, knowing that it can change at any time. Ironically, I think this results in more deeper and more sustainable positive outlook!

I agree about the recovery videos. I really think Advertising Standards should look into the 'success stories' that these websites publish. At the beginning of my illness I found them really enticing. Now I watch them and it's clear that many of them had some other condition that was treated like thyroid or celiac, some of them are in no way fully recovered and some of them weren't ill with ME as I know it to begin with. But it's taken years of being ill for me to be able to see this, if you're newly diagnosed it's so confusing.

 

I've heard from a number people over the last 2 years who tell me of the things their best friend's aunt's work colleague or [insert other random person] did to recover from ME. One even re-programmed her brain! When I ask them to explain what they mean by 'recovered' they don't actually know what they mean or they just accuse me of being negative. One of these people was even a psychologist friend who accused me of being resistant to receiving help from others simply because I'd asked her qualify what she meant by recovered, but I think she was just being defensive because she didn't think to clarify that herself before passing on details of this wonderful cure. I recently read of something that supposedly worked after 10 years (I think it was Perrin's Technique). Maybe my expectations are too high, but I'd be hoping for a faster cure than that, especially if I was paying out for it every week! At that point I'd wonder if the improvement had come about naturally!